Starting Chemo July 2019
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ok yeslamadragon I have a question lol how in the world do dogs go to the bathroom if there is that much snow? I have seen all these videos of dogs diving in and disappearing in the snow and all I could think is my little baby. I would be scared to death I would lose him, he would suffocate, or the probably the most accurate would be refuse to step foot out of the house. Congratulations on having your last treatment soon! I normally dye my hair the red/burgundy and some brown colors but with my short hair and me washing it everyday it fades so fast. So we tried going back to the ash/blonde/gray this go round to do some thing different. Nobody ever knows what color I’m going to walk in with 😂😂.
2019whatayear thank you so much 💕💕💕
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People with small or snow-averse dogs generally shovel out an area for them to go. But dogs like huskies and Akitas and Samoyeds are made for cold and snow and tend to not have any difficulty (and don't get lost under it, LOL). And there are some dogs that just don't like getting their feet wet or cold, and their owners usually have to resort to booties. But a family member in the South has one of those that nearly has to be forced (carried out) to pee outside when it is raining, so some dogs are just high-maintenance!Yes, this teal is just not washing out like the other colors. I prefer the ones that wash out fairly quickly so I can change things up. It may be time to go super-short again! Since I have been having to cut it myself during COVID I might do better with the clippers anyways.
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I had to chime in on the dog conversation. I lived 32 years in Vermont and we would see some real deep snowstorms. We had 2 labs during that time and we would snowblow paths for them but the most fun was watching them leap into the snow banks and then work so hard to get themselves out. Thanks for bringing back a fun memory.
I have been diagnosed with permanent hair loss from the Taxotere. My last treatment of Taxotere was November 12, 2019 and after that I did 14 treatments of Kadcyla, which does not cause hair loss. I now have extremely thin hair with patches of no hair, especially around my crown. My MO said he has rarely seen this but I just made an appointment to see a hair specialist in a couple weeks. I hate that every time I look in the mirror I’m reminded of this dreadful disease. I’ve been using rogaine for 8 months but no improvement. Otherwise I’m just taking anastrozole daily, which I’m tolerating well.
Happy New Year to all. It’s got to be better than this one, huh
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flnana2 have you tried monat intense repair? It’s a shampoo and spray. That’s what I used for my hair and I think it worked well. There are dealers that sell it and eBay I found it to be cheaper than dealers. It may be with a try. I know that is a terrible thing mentally.
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Has anyone considered getting a tattoo across mastectomy or lumpectomy scars? Not nipple tattooing but artistic tattooing? We have someone here in Chicago that specializes in this and also teaches to others. The work I’ve seen is gorgeous, but it’s a year wait to get it done. Just wondered what other’s thoughts were on the topic?
Diane
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I want to get my BRCA2 variant as a tattoo somewhere (it's just a short series of numbers and letters. I did a BMX and have no reconstruction so I could do a whole cover-up thing, but I don't mind those scars. The port scar I don't like, maybe one day I'll get a tattoo there. Are you going to do it?
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Yes, I think I will do one across my reconstructed left breast. Here is the website, if anyone is interested in looking at what I’m considering http://www.allentattoo.com/mastectomy . It’s not that the scars bother me, but the PS is pushing to do a nipple reconstruction and 3-D tattoo in the office and I’m just not enamored of the other examples I’ve seen. They all look a bit strange to me. I’m having revision surgery in March and the PS said he would fill in and fix the port scar as he thinks it is very ugly currently. I have quite the divot there and two very distinct scar marks from the insertion and removal of the port.
Diane
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Yes! I have a big divot too, blech!
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Wow, I still have my port (just finished Kadcyla end of December). I am keeping it for now, mostly because of superstition. I doubt I have enough tissue there to have much of a divot when it comes out.
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YeslamaDragon,
Congrats on finishing your Kadcycla! I finished Herceptin in August but got my port taken out in March because it never healed properly and was beginning to malfunction regularly. After that I got the Herceptin as an intramuscular injection (3 separate syringes each time). Those shots actually made hate needles. I never minded them before.
Diane
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How is everyone doing? Has everyone finished up with chemo and reconstruction? I haven't been on this site lately. Have been busy with working from home and virtual schooling for my 3 kids.
I finally will have DIEP flap surgery next week. It was delayed due to COVID. My last PS fired me as a patient lol. I kept saying no to all of her reconstruction suggestions. I found a new doctor who is much better and more experienced.
In preparation for the flap surgery, I've been trying to get the Lupron injection instead of zoladex. Today I was able to get the 3 month Lupron since the monthly dose is still is unavailable nationally.
The last 3 months have been super stressful. I've had 2 CT scans, started zometa, found I have high cholesterol now, and will be starting Verenzio. Always something new to worry about it seems.
Diane, I think those tattoos are very beautiful. I hadn't heard of that before.
Hope everyone else is doing well!
Divergent
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Hi Divergent!
I hope all goes well with your upcoming surgery. I didn’t do reconstruction.
Is the Verenzio part of the clinical trial
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I was due to have phase II of my reconstruction next month but I fainted out of the blue just as we were about to take our dog for a walk. Freaked out my DH and I spent 7 hours waiting to be seen in the ER. I bailed at that point but am having an MRI, Neurolgy, Cardiology and nuclear excercise stress test all next week in an attempt to figure out if it was a an acute attack of syncope or a seizure. Until the all clear, no surgery and no driving. What an absolute pain in the ass for my DH. EKG at the emergency room was concerning, but of course they don’t take time to provide any explanations. Very frustrating experience.
Looking at more than a year for the tattoos, and fingers crossed that no more meds or doctor’s appointments become derigueur.
Hope others are coping with isolation. I really want a vacation someplace when it’s safe, like Montreal or DC in early summer with my girl friends. Oh well, if not this year, then maybe next🤞
Dian
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Well I hope it turns out it was just a fluke and all is well! I am really really hoping that there will be enough vaccines available in Cook county to vaccinate 1B tier people . Give me that vaccine!
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Diane, I hope all your tests go ok. That must be rough not being able to drive and have surgery!
2019whatayear, oops I meant to write Verzenio...it's hard to remember all of the drug names. My MO wants me to take it based on the good results from their clinical trial. I think it reduced the chance of cancer recurrence by 30%. I don't remember all the details. But if it gives me another couple of years without becoming stage 4, I'm willing to do it.
I wish I could visit Chicago! I grew up in the suburbs and miss my family there! I hope we all get vaccinated in the next month or 2 and can get out more.
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I asked my doctor about Verenzio or however it’s spelled lol- but MO Said it’s not approved for use in early stage BC and off label isn’t approved by insurance if she could get it - so you are “lucky “ to get it
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My parents just finished their course of two vaccines!! In Chicago, my DH and I won’t qualify for our first vaccines until group 1C which probably won’t be until May or June. I haven’t heard anyone say that I would qualify to go early as a member of an at-risk group, despite, post-cancer and high blood pressure and who knows how much it will have mutated by then! I just hope the vx that my parents got will cover them for the emerging mutations.
So far my MRI came back completely normal, now I just have neurology, cardiology and stress test appointments next week to determine why I fainted/seized. Maybe after the tests someone can tell me if I had an episode of syncope (fainting/cardiac) or seizure (neurology/electrolytes out of whack). Anyway, I have to get a COVID test on Monday morning so they can run the stress test Wednesday. It will be interesting to find out if I’ve been exposed or asymptomatic. SX will have to wait until probably May or June now, but I’ll be really glad to have it done/ I have one spot of fatty necrosis about the size of a marble that sits right on the median upper edge of the restored breast. It’s like a hard knot right over the underlying rib and is actually rather uncomfortable. The PS doesn’t want to fix it for fear of wrecking the nice form he created for me, so I’m trying to learn to live with it. I find it annoying.
Divergent - very good luck on your DIEP surgery! My outcome was really good, but I HATED the first three days after surgery. I felt so incapable to taking care of myself and the abdominal binder was poorly sized for me and was miserable. I ended up taking it off as soon as I got home and putting on a spank instead fro about a week. After that I said “screw it” and went without.
My hopes are that everyone is hanging in there okay and hasn’t had a shocking recurrence or the like. Is life starting to return to a new normal, or are you still in the once/week to once/month doctor’s visits? Let me know how you’re feeling. Sending hugs, love and cheer to everyone. You guys have all been the best throughout this experience!
Diane
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DVH Mouse: You must be so relieved about the MRI! It is so good to see that news. I am a fainter myself, so if I fainted my docs would just say, "yup, let's tweak your meds, don't drive for now" but I do warn people who are around me a lot as I have convulsive syncope -- it looks like a seizure when I faint. Because of that long ago I needed a tilt table test, but since I fainted nearly instantly and had the convulsions when they put the table up I didn't need any further work up (oh, well, I get regular echos for a congenital problem anyways). I hope yours turns out to be just a random, one-off faint because your body was under temporary stress! I do know how scary fainting is, and how awful it feels afterwards!
I am also sorry your PS doesn't seem willing to prioritize your discomfort over their aesthetic results!
DH and I were just talking about how much I love Chicago, and how much we want to get back there. Sigh. My Mom still has a chair that has scorch marks on it from when the family rescued it from the Great Fire. But I was the last one to leave, and none of us still live there
So post-COVID travel will be to see all the family we haven't seen since the Before Times. Which for us includes before cancer and chemo -- so nearly a year before COVID even hit. Sigh. On another note -- how are people's fingernails doing? Mine are maybe more fragile than ever!
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Hi all! Glad the MRI was all good DVH mouse! My parents got their 1st shot on Friday -they are in GA. My MIL got her 1st shot on Thursday. I’m really hoping that we’ll be able to get vaccinated be for summer. My dad had a CT scan abodomen/pelvis and they called today there was an “area of concern” and him and my mom are going to talk to doc onTues ( urologist) I think he may find out he has prostate cancer - A real PTSD moment for me :-(
I have to schedule a follow up CT scan in late March - rountine but still totally stressful
I hope everyone is doing well!
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Yeslama - I have had absolutely awful fingernails until recently, and they’re really only marginally better, but still any improvement! Thank you for sharing your own experience with fainting - very reassuring! Though I feel like, you know, one thing gets better and something else shows up - so frustrating. Chicago’s actually had a pretty winter (I love it when it snows), and our young dog thinks its just the best thing ever! Even the super cold didn’t bother her. She was so funny bounding in these great big leaps in snow up to her nose.
2019 - hope your CT goes well. Sorry to hear about your Dad, it’s one of those things I worry about with my parents as they get older. Either that our my Dad’s going to have a tree fall on him one day when he’s out cutting wood (hopefully not!!).
I hope everyone gets their vaccine soon. We’re probably going to be in the early summer group too, but hope that means we’ll get to go to my parents’ for Christmas this year.
Best to everyone
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divergent how did your surgery go? I had my diep done 12/2019 and loved how it turned out. I’ve had 2 touch up surgeries since, doing 1 more then will do tattooing. If you have any questions on things post surgery let me know I’ll help or give tips on what helped me.
Glad everyone is doing well!
OBGYN recommended I have a hysterectomy so going tomorrow for consultation for that. Shouldn’t be too bad from what I’ve heard. They do it robotically. At this point I don’t think anything fazes me after all the other stuff I’ve done. We are going to Anna Maria Island Fl 1st of April and I can’t wait! Still waiting for them to open NC back up, this is so old. Other than that doing good and working everyday. My son is 15 now, played basketball now baseball so we are busy. Oh can’t forget he’s driving 😳😳 that’s a lot to adjust to 😂😂
I hope y’all have a great day 💕💕
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Hi jjpope1,
surgery went well. I ended up having a delayed Diep flap procedure because they were worried my radiated skin wouldn't survive. Luckily it did great. I ended up in the hospital for a week. Honestly it doesn't look all that great yet. But I'm sure it will heal and start looking better. I wasn't expecting so much back pain from being hunched over all the time. Did you end up being puffy? My feet, stomach, and skin around the flap are so puffy. Maybe it was from the IV bags I got.
Good luck with your hysterectomy. And with teaching your son to drive! My son will be 15 this summer....it's going to be hard to adjust!
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divergent Are you walking with a walker? I have a bad back and used a walker until I was able to stand up good. It helped so much because it took all the pressure off my back. I wasn’t puffy so it may be from the fluids and also could be swelling from the surgery. I was also in the hospital a week. I think that it typical for that type of surgery. It’s a huge surgery and recovery but I don’t regret it one bit and would do it again if I had to choose.
Yes driving....... he thinks he’s a pro already 😳😳 a lot of holding onto the door and the oh shit bar 😂😂 oh and of course constantly giving instructions. He does pretty good except when changing lanes. His version is to look and turn all in one motion instead of looking a couple of times and merging 😂😂 oh and can’t forget trying to look at geese in the sky while driving. He doesn’t like driving with me rather drive with dad 🙄 So it’s fun can’t wait for you to experience that.
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divergent - I had a DIEP in Nov 2019 too, and yes your back feels like you pulled every muscle by the end of the week. I found that laying flat on my back on the bed for short periods of time was helpful. It helps to relax both abdominal and back muscles. One weird thing I noticed was that it felt like I had piano wire zig-zagging from my hip bones to the bottom of my ribs. My uncle told me it was most likely mattress sutures. I couldn’t eat with the abd. binder on so after a week or so, I just had to ditch it and change to a two weeks of spanx. I was unfortunately surprised at how quickly I put weight back on, though. Luckily I seem to have some sort of “set point” and I lost a couple of pounds. I have some fat necrosis that are about 3-5mm round masses along the median edge of the reconstruction. They are painful to press on but the PS has me convinced that he will undo all his good work, if he has to go back in and remove those. I was due to have had my revision surgery last week, but due to my syncope/seizure episisode, I’ll wait until April to meet with him and make a new plan. I’ve decided to go ahead and do an artistic tattoo across the breast rather than nipple reconstruction and tattooing.
Somewhat glad we didn’t have kids, the teenage years seem to be fraught with all manner of ways to give your parents’ heart attacks!
My very best wishes to you as you heal and cope. Feel to reach out to either myself or jjpope1 if you have specific questions we can try to answer. Stay on top of your pain meds, drink plenty of fluid and if you are comfortable using ice for pain management, make sure to ask your PS when it’s safe to start using it.
Cheers,Diane
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Hi jjpope1 and Diane
I'm doing much better now. Off all pain meds. I didn't have a walker or binder...the walker would have been helpful. It's still tough to bend over to pick things up so my kids and husband still need to help out. I'm hoping my last drain will be out next week and that I can start physical therapy soon (I'm assuming that is the next step....I'll ask at my next appointment). Diane I think the artistic tattoos are very beautiful. I'm not sure if I'll do that or the regular tattoo. Hope you both have a great Sunday afternoon.
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Divergent: May the remainder of your healing go swiftly and easily!
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Hoping your healing is going well! Hang in there and try not to rush. I'm just nearing the end of my journey that started in July of 2017 with a double mastectomy, DIEP reconstruction, nipple reconstruction and tattoos just last week. Gotta say I'm pretty pleased with the final outcome even though it did require several revisions and fat grafting. Try not to get disappointed with revisions and time to heal, they are worth it. If you do get tattoos be sure to search out a tattoo artist that specializes in this type of tattooing, my research supports that actual tattoo artists are better than someone in your doctors office. It is a growing art thankfully! Not sure where you live but in the Seattle area Eric Eye has a growing following. At 68 I looking better than I did when I started this journey.
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Has anyone had hard knots of tissue form in your reconstructed breast(s)? My PS says that these are areas of significant scarring from where he had to terminate a set of tangled blood vessels. I was hoping that by 18 months, these would have softened some and become less pronounced, but they actually haven’t changed one iota and they are annoyingly painful. Actually my reconstructed breast is getting more painful and itchy, which I’ve taken to mean that some of the nerves are recovering but it is rather uncomfortable.
JZFN - it’s good to hear that it takes awhile (longer than I expected) to heal from the surgery and revisions. I have an appointment tomorrow with my PS to plan for the revision surgery (hopefully the only one needed). The surgery was originally scheduled to happen in March, but other issues arose that had to be dealt with first.
I hope everyone is still on the road to healing and closer to getting yourself and your loved ones vaccinated.
Cheers,
Diane
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Thanks YeslamaDragon and JZFN for the encouragement! The chemo, radiation, and reconstruction is such a long process! Sometimes it's hard to be patient.
Diane-hope you are able to get some help and relief for the pain and itching.
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hi everyone. I finished carboplatin perjeta and whatever the other one is in October 2029, radiation in feb 2020 and herceptin in July of 2020. I still have lots of aches and pains in my breast and underarm which freaks me out. The anxiety of recurrence and the sadness of the pre-breast cancer me is overwhelming some days
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